Waiting lists are inevitable. It's how we manage them that matters.

It is well known that COVID-19 has had a significant impact on hospital waiting times.

Early in the pandemic, the NHS postponed lots of non-urgent care, freeing up beds for COVID-19 patients. As things progressed, people put off coming forward with new symptoms because they were simultaneously worried about putting extra pressure on the NHS and the risk of catching COVID-19 themselves.

Most recently, the struggles of seeing a GP may mean there are even more people who need hospital care who simply cannot get referred in the first place.

All this has combined to create a huge backlog of people waiting for a diagnostic test or treatment.

Even with the extra money announced by the Government, long waiting lists are here to stay. The NHS lacks the staff to see people more quickly, and doctors, nurses and other clinicians take a long time to train. 

But what does this mean if you or a loved one are currently on a waiting list or think you may need hospital treatment?

Over the last three months, we have heard from more than 2,500 people about their experiences, helping us to dig beneath the headlines and support the NHS to make good policy decisions on how best to manage waiting lists.

Current waiting lists

How long are people actually waiting for care? 

Let’s start by looking at how long people are actually waiting for hospital care.

At a glance, media headlines can give the impression that very long waits are the norm and that everyone will be waiting two years to be seen. But in reality, many people will get care much faster than this. 

For example, the latest performance figures show that the most typical waiting time is 11 and a half weeks to start treatment.

Of the 2,500 people we spoke with, nearly one in ten (8%) reported waiting for more than two years to receive care. This is still far too many, given the impact waiting can have on someone’s mental and physical health, but is lower than many may think.

The problem with how waiting lists are talked about is that people may see no point in seeking out a crucial diagnosis or much-needed treatment because they fear they will never be seen anyway or feel guilted into not ‘burdening’ the NHS further. This risks creating even bigger problems for patients and the NHS.

How big of an issue are cancellations?

Whether people are waiting for an appointment or surgery, cancellations are one of the most significant issues raised with us about the current pressures.

We know from previous work that it is not just the length of the wait that affects people's experience but certainty too. People want to know they have a date in the diary for their treatment, and they want to be able to plan their lives around it.

Whether it be work commitments, caring responsibilities or even scheduled treatment for other conditions, there are plenty of reasons why people cannot simply work to the NHS’s timetable. Cancellations, especially when they are last minute, can cause major disruption to people’s lives and leave them feeling dejected.

Our research found that over the last 18 months, one in three (32%) had a procedure cancelled at least once (15% more than once).

Of those who had treatment cancelled, 18% were on the day itself, and a further 29% had it cancelled in the week leading up to it.

People appreciate the pressures the NHS is under, particularly now, but such high levels of late notice cancellations are a problem.

What is waiting for care like?

While the overall length of time spent on lists and certainty that a procedure will go ahead are key to people’s experience, they are not the only factors that affect what it’s like waiting for care and their quality of life.

Communication

Many people told us that the amount of supporting information they were given while waiting for care was inadequate, especially in helping them manage their condition.

• In our self-selecting survey (likely to have a higher proportion of respondents with a negative experience), 58% said they received no information at all. A further 21% said the information the NHS provided them with was not good enough.
• Even in our nationally representative polling, conducted by YouGov, a disappointing 45% of people said they received no information or not enough whilst waiting.

"From being referred for a total hip replacement on February 11th, 2020, I finally had my operation on August 31st 2021. That was a wait of over 18 months during which time my condition and the excruciating pain accompanying it deteriorated significantly so that I became virtually housebound. At no time was I ever contacted by anyone with updates of any kind but was left to suffer in silence. Primary care was catastrophic and trying to see a GP was nigh on impossible. It has been such a difficult time because I have no family in the UK. I felt completely abandoned and alone and there were times when I lost all hope and seriously felt I'd be better off dead."

We also found that lower-income respondents were even less likely to say they had received information. Where they did receive information they were more likely to say it was inaccessible or of limited use to them.

Interim support services

We asked people if they had received any more practical interim support, such as pain relief, physiotherapy or mental health support, whilst they waited for their hospital treatment.

Just 15% of those we surveyed said they had received some support, with 82% saying they didn’t receive any help at all. Not everyone surveyed will have needed support, but this is still surprisingly high.

Where people face long waits, it is precisely this interim support that can make the experience bearable.

"Two steroid injections in two months - was put on waiting list when consultant saw my x-ray during that procedure.  6 months later I requested a 2nd steroid injection as the pain had become unbearable, I got a month of my choice to allow me to be comfortable enough to enjoy a short break away. Through rest it remains bearable."

Interim support also helps keep them well and gets them ready for surgery. Without it, people’s health can deteriorate significantly which has a devastating impact on patients and will cost the health and social care system in the long run.

Solutions

What is currently being done?

NHS England recognised early on in the pandemic that improving communication with patients on waiting lists would be crucial. With the help of key partners, including us, they produced a guide to good communications for hospitals to use when contacting those waiting for care.

However, it is clear from what people have told us that implementation of this guidance falls seriously short. As a result, people on waiting lists are feeling lost and alone.

The Government has pledged significant additional funds to help the NHS get back on track. Much of this will create new community-based diagnostic centres and specialist surgical hubs to help get through backlogs quickly.

While this is a positive step, solutions like this could make health inequalities worse if poorly implemented.

For example, take the creation of surgical centres focusing on delivering large volumes of hip and knee replacements. Our research shows that people are often willing to travel if it means they will be seen quicker, but for 13% of our respondents, they could only take up this offer if the NHS provided help with travel costs. A further 6% said they would only travel for treatment if a friend or family member could come with them and they would get accommodation.

Therefore, the Government and NHS must consider how deprivation and income affect people’s experience of waiting and use this to design solutions to tackle the backlog that improve, not worse inequalities.

Commenting on the research findings and the recommendations, Sir Robert Francis, Chair of Healthwatch England, said:

“The NHS is under huge pressure right now, but this research is a strong reminder that we cannot treat waiting lists as a mathematical problem.

“This is not about just getting the total numbers of waiters down as quickly as possible or reducing overall waiting times. This is a human problem and we need to focus on managing waiting lists in a compassionate way.

“People need to know that the NHS is open for business and will see them to work out what is wrong and get to them as quickly as possible. For cancer symptoms this will often mean a wait of less than two weeks, but other less urgent conditions will take longer. The key is making sure everyone comes forward and if you have to wait then the NHS and other services make it as bearable as possible.”

“The Government has put in significant extra resource to help the NHS tackle the backlog but the imminent recovery plan needs some bold new ideas too.

“A mix of more admin staff, better use of technology and investment in support services, such as physio and mental health support, would all go a long way to improving the experience of waiting. This, combined with more regular and personalised communication, will help the NHS ensure no one waiting for care feels lost or forgotten.”

Where our data comes from

The views report above come from two evidence sources:

• The views and experiences of 1,441 people and relatives of those currently on waiting lists gained by national polling commissioned by Healthwatch England and carried out by  YouGov Plc between 19 and 23 August 2021.
• The views of 1,075 people in Healthwatch England’s national survey, promoted by local Healthwatch, which ran between 6 September and 11 October 2021.